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Advocacy Mondays: March Recap

M.O.M. (Mothers and Others March) Recap from F.E.A.S.T. Board Member, March Social Media Committee Member and Mom, Becky Henry

As the plane left Minnesota heading to D.C., the reality set in that we were changing history with this first ever joining of forces by over 29 eating disorders organizations to change how these biological brain illnesses are seen, researched and treated. You see, over 15 years ago MN Senator Paul Wellstone told early eating disorders Mom Pioneer Kitty Westin, "Kitty, what you need to do is bring a group of angry mothers to Washington D.C. to get the attention of Congress." It was actually about to happen! Finally. After too many years of moms silenced behind locked doors in shame and fear while our children die and some, including my firstborn Jessica, are lost indefinitely as eating disorders have hijacked them from our lives, we put aside different agendas, different perspectives and joined forces, arm in arm.

M.O.M. March Planning Committee member Cherie Monarch breathed life to this dream with a conversation with Debra Schlesinger in early 2014. Eleven years ago Debra's daughterNicole's life was taken by an eating disorder, just as it was beginning. Debra has been helping other moms to cope and advocate through her volunteer work with EDRS, her Facebook groups; Mothers Against Eating Disorders (MAED), MAED Advocacy and Activism and MAED Professionals.

Every non-profit in the field throughout the world was invited to the M.O.M. March. Twenty-nine came to join hands with us. This is unprecedented.

Arriving at the beautiful J.W. Marriott hotel in D.C.I was embraced by mothers, some of whom I'd met before and some I'd only known via social media. There are videos and more photos on the MOM March Facebook page.

I thought I'd have lots of prep work to help with, but our fearless and competent leadership on the planning team; Johanna Kandel, Founder of The Alliance for Eating Disorders, Kathleen MacDonald, Policy and Communications Director of The Eating Disorders Coalition, Cherie Monarch and Debra Schlesinger of MAED had it handled...as they had for months and we got to go relax and enjoy a meal together with other moms who'd arrived.

Monday night Cherie and I walked to the West Lawn of the Capitol to make sure we knew where to go in the morning. An amazing sight!

Tuesday morning after F.E.A.S.T. Founder Laura Collins and our awesome Uber Cab driver Hanna assisted us in loading over 30 boxes into Hanna's giant SUV we headed to The West Lawn of the Capitol under a cloudy sky. We were met by Johanna Kandel's big team from The Alliance who unloaded and set everything up.

Four hours later over 250 mothers and others had arrived and the speakers began. An inspiring line-up of 16 speakers including; moms, recovered people, an attorney, a doctor, and therapists filled the afternoon with facts, hope, reality and motivation to keep moving forward. You can see the bios, photos and some of the speeches on the www.marchagainsted.com schedule page and the M.O.M. March Facebook page. If you have photos please share on the facebook page.

The clouds parted, the sun came out and Jenn Friedman and Faith Yesner provided touching music.

As mothers and others were asked to raise the signs created earlier that morning, there wasn't a dry eye as we saw the lawn filled with the faces of our children against the sea of purple and green shirts.

Our hope is that one day we can eliminate the need for any of us standing there in purple shirts symbolizing children still in recovery and recovered because recovery will be the norm. We also aim to make sure no more green shirts will be added for mothers and others who had a loved one die from eating disorders.

We regrouped for a fantastic and refreshing dinner at the Hard Rock Cafe. That hamburger and air conditioning were just what I needed after the long hot day. We were all exhausted.

Sleep. We needed it after such an emotionally and physically exhausting day.

The Eating Disorders Coalition, under the competent, capable and experienced leadership of Al Guida and Eating Disorders Coalition Policy and Communications Director Kathleen MacDonald began Lobby Day early Wednesday morning with training for first timers.

Though I'd participated in the Lobby Day with F.E.A.S.T. previously and had a private lobby day with Kathleen MacDonald, I'd not experienced such a large group of Mothers and Others lobbying together before. It was incredibly powerful.

Being that we are both from Minnesota, I was fortunate to get to lobby with hero and true pioneer, Kitty Westin.I am professionally and personally grateful to all that Kitty has done to change how insurance companies and our lawmakers see eating disorders. It was amazing to hear Kitty speak to the Legislative Aids...she's been doing this for so many years, has the protocol, intricacies and decorum down pat. She knows just what to say, how to say it and her timing is impeccable. In each office as Kitty unfurled the poster of her daughter Anna and shared how Anna died 14 years ago due to lack of training of both eating disorders professionals and insurance company executives, my heart broke again...and the fire in my belly was reignited. Fourteen years ago in Minnesota as Anna died from her eating disorder, my daughter Jessica's horrifying nightmare with eating disorders began...and we are still fighting for decent coverage and treatment of these most deadly of all mental illnesses.

Due to all of these mothers and others breaking the silence and the tireless work of the Eating Disorders Coalition, we are getting more and more lawmakers who are willing to sign onto the FREED Act. With their help, we will educate our upcoming health care providers and policy makers so we won't be saying the same things in 14 more years.

I know I'm not alone in my gratitude that this historic event finally took place. Too many of us have experienced horrific results of treatment failure due to the lack of training given to health professionals.

Please help us save our kids lives and spread the word. Sometimes speaking out is scary indeed. One mom at the March was told to stop airing her "dirty laundry"...would anyone ever say this to a family fighting for better cancer research and treatments?

Many years ago when people said to me, "Becky, you're so open about your daughter's eating disorder!" I realized it was going to take families coming together and insisting on education and change to get us out of the dark ages with these biological brain illnesses. Thank you to all who worked collaboratively to help us take another step away from stigma.

Working on the social media committee for the March with New Moon Girls Founder, Nancy Gruver and Eating Disorders Coalition Policy Director Kathleen MacDonald was a delightful experience. These are people who get it done.

It was so encouraging to see so many families courageously stepping out and speaking up. I thank each of you for helping stop the stigma and shame.

Want to know how you can get involved next year? Check it out at www.marchagainsted.com

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